Forming a support group for patients with mpgn ddd c3g
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Forming a support group for patients with MPGN/DDD/C3G . Ian Mackersie and Emma Woodward aHUSUK 22June 2013 . 1 What do you want a support group to do?. Support patients and families – how? Spread the word – where? Increase awareness of disease – among whom? Raise funds –how?

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Forming a support group for patients with MPGN/DDD/C3G

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Forming a support group for patients with mpgn ddd c3g

Forming a support group for patients with MPGN/DDD/C3G

Ian Mackersie and Emma Woodward

aHUSUK

22June 2013


1 what do you want a support group to do

1 What do you want a support group to do?

  • Support patients and families – how?

  • Spread the word – where?

  • Increase awareness of disease – among whom?

  • Raise funds –how?

  • Campaign – about what?


2 have clear objectives

2 Have clear objectives

  • Objectives must be

  • realistic and achievable

  • for charitable purposes

    Strategic objectives might be

  • support people with MPGN

  • support their families and carers

  • educate public and clinicians about the condition

  • Will also need operational objectives


3 possible structure

3 Possible structure

Unincorporated Charitable Association

  • Must have charitable aims

  • Must be exclusively for public benefit

  • Unincorporated - unlimited personal liability of trustees

  • Subject to civil law and Charities Acts

  • If annual income over £5000 - must register with Charity Commission for England & Wales (CCEW)

  • Regulated by CCEW

  • Use CCEW model constitution

  • Possible to incroporte as Charitable Incorporated Organisation (CIO)


4 elect trustees and management

4 Elect trustees and management

  • Charity run by board of trustees elected annually

  • Minimum 3 officers – Chair, Secretary, and Treasurer

  • Experience of voluntary sector, public sector (esp healthcare) or business useful

  • Suggest no more than 10 trustees

  • Even and fair distribution of work among trustees

  • Defined responsibilities and accountabilities

  • Setup will require much additional work

  • Think of a good name


5 attract and involve members

5 Attract and involve members

  • Members are lifeblood and future trustees

  • Adopt simple and wide criteria

  • Recruit as many as you can

  • Create inclusive atmosphere

  • Respect any who do not want to be active

  • Members bring good ideas and are essential to campaigns

  • Combine AGM with conference, speakers and expert panel


6 networking

6 Networking

  • People often prepared to help charities

  • Use contacts but watch for nepotism, favouritism and possible conflicts of interest

  • Develop friendly links with clinicians, politicians, journalists and other media folk, NHS management, pharmaceutical companies and rare disease groups Be aware they all have a different agenda but be aware that they may have a different agenda

  • Join associations and get invited to things


7 use electronic media

7 Use electronic media

  • Website essential - can be as sophisticated or as plain as you like to start

  • Control of material going out in your name on website and social media essential

  • Remember not all members have access to internet or social media


8 think about funding

8 Think about funding

  • Collections, grants, donations, legacies, merchandise, sponsorship, events and grant aid are all potential sources of income

  • Raising significant money by these means is hard

  • Many support groups take unconditional grants from pharmaceutical companies

  • Concentrate on funding own costs and expenses, leave expensive research funding to others


9 behave with integrity and honesty

9 Behave with integrity and honesty

  • Protect and promote your reputation

  • Ensure decisions made ethically and independently

  • Be open and accountable

  • Identify and manage conflicts of interest

  • Do not take a party political line

  • Act in best interest of patients at all times

  • Consider wider effect of actions


Thank you and good luck why not start today

Thank you and good luck…why not start today?


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